navigating the system…or not

I know I’ve shared about this before with Little T and his hypertonia, but Little T has this funky little thing going on with the right side of his body, where it’s a tiny bit stiffer than his left side. It’s one of those things that you wouldn’t notice unless A) you’re around him a lot, or B) a physical/occupational therapist. It’s little things, like he can only go down the stairs with his left leg first, or he is right handed unless he’s doing some things that uses his fine motor skills, and then he switches to his left hand because his right hand is a little stiffer/weaker. He’s a bright kid and tests very well in everything else, it’s just this slight muscle stiffness that he can’t seem to shake. He’s been going to physical therapy and occupational therapy since he was 6 months old through the regional center, but when he turns three he loses all those services. *As a side note, I have to tell you that working with the regional center has been awful and frustrating, but that’s a blog post for a different day.*

So Little T is in this weird place. He’s doing well enough that everyone tells us he most likely wont qualify for services through the school district when he turns three. It’s not that he doesn’t _need_ services. It’s just that he isn’t as bad as someone who has more severe issues, and so he’s going to be glazed over as this child who can function and get by, even though he’s not able to do things at his full potential. It’s really frustrating as a parent, and I think the thing that drives me craziest is when people tell me that he’s going to be fine and that it could be worse. That’s all true and I’m glad that he’s doing so well, but Big T and I aren’t at the point where we feel we can give up on his leg and say that he’s doing good enough to get by. Yes, he is doing fine. Yes, he is going to be okay. Yes, we should be trying everything we can so he doesn’t have any issues at all.

What makes it harder is that the older he gets, the more he is able to communicate with us about his leg. He mostly says his leg hurts in the morning when he wakes up. Yesterday, we were walking, and his right leg was turning out a little bit and he was picking it up a little bit less than his left leg. He started hitting his leg with his hand with frustration and was saying that his leg wasn’t working. Moments like that are so hard.

Today, we’re going to see a physical therapist and an occupational therapist through our private insurance to see if he can get some more PT covered once his services through the regional center end, so keep your fingers crossed for us. If it doesn’t get approved, I’m not sure what we’ll do. I just want him to be able to play basketball and do all the things he wants to do without any limitations. If that doesn’t happen, then it doesn’t happen, but I don’t want it to be for a lack of trying.

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5 thoughts on “navigating the system…or not”

Thank you, Hope. His physical therapy evaluation went very well, and they’re going to give him a brace to wear for a little bit. She’s hoping it will help stretch his leg out, so keep your fingers crossed. 🙂

Yeah! Working in the medical field, I really hate to see people who stay on top of their kids conditions triaged to the back of the line because they “aren’t that bad”. Waiting until they are “that bad” seems so antiproductive… Hang in there!

Aww, Jenna, I’m so sorry you’re having to go through this. I think I told you my nephew went through something similar and seemed to be falling through all of the cracks when it came to eligibility for the services he NEEDED. He has since been diagnosed with CP and it seems that after receiving his diagnosis the gates to ALL kinds of services flew wide open. He now has regular therapy, services through school (he is 5), and fittings for braces that are constantly being remolded to suit his growth/ needs… all covered by insurance. I would suggest you really push for some sort of diagnosis. My sister had a hard time with feeling like her child was being “labeled” but really, my nephew could care less and he’s now able to run around a playground with his friends without his leg cramping up. Best of luck to you!